Had knee surgery 09/2010 & diagnosed w/CRPS in my left leg in 03/2011. Spread happened pretty quickly from June - August but was limited to my left leg (allodynia on thigh, deep "bone" pain in knee/ankle.)

Well......the last month I have noticed pain in my left hip as well. Then for the past 2 weeks my tailbone hurts - not just when I sit but also when I stand or reach for something.

Now....this week I definitely have Allodynia in my Right thigh & sensitivity in a rainbow pattern across my butt from left to right and my tailbone pain is worse.

I am terrified. I had been doing pretty good for the past month & it seemed like my meds were finally balanced out.

Questions for the veterans out there......
1. Can tailbone pain be part of RSD?
2. Has anyone had this when the pain spreads from one leg to the other?
3. Can you have RSD in your back?
4. If sympathetic blocks don't work for my left leg can they possibly work for the right & stop the spread?

Sorry to be so lengthy but as I said I am pretty scared. Gonna call my PM doc tomorrow but is there anything she can do???

Alshia,
I can answer a few questions. Yes, it can spread from one leg to another. It's called "mirroring". There is several people here that have full body RSD so yes it can go up the tailbone or trunk area as well. Sympathitic blocks may work, but you may want to consider Ketamine which works on the body not just one area.

Thanks - I am on a Ketamine mix cream. Do you mean Ketamine in another form?

I'm sorry that you are going through all of this. I'm not super knowledgeable...but I do know that RSD can spread to any part of your body. There is even internal RSD. Mine started in my left ankle and has spread to my upper body affecting everything between my waist and my neck (including my arms and hands). It's definitely not fun.

I have heard that blocks can be successful in areas of spread. In those new areas the pain may be sympathetically maintained pain instead of sympathetically independent pain (the latter of which blocks do not help). So it's probably worth a shot...definitely something that you should discuss with your doctor.

Don't be scared AlishaE...we are all here to help you out. It can be terrifying for sure but remember stress will make it much worse so take a few deep breaths and calm down a bit. Take it one day at a time and do the best you can each day.

I've had full body for over six years now and yes rsd can go anywhere it wants to go. Blocks never worked for me but it worked for some too. You have to find out what will work for you. Never lose hope and keep on moving forward. Stay as active as possible...even stretching while lying on your bed is considered being active.

I had rsd start from a trauma in one foot and within four months it was full body and I was unable to move as everything hurt. It only goes full body in about 7% of cases so hopefully you will be one that it doesn't spread in. Also, remember every time you get any kind of needle it can cause more rsd or it to spread so try to limit how many injections you get and have them use pediatric needles (called butterflys) as it hurts less than regular needles.

And your reply was not lengthly. Let us know how you make out at the doctors. Best of luck to you and we are all here for you. We are a great big family whose arms stretch out over land and sea!!
Take care,
kathy d

The doc says it shingles on the right side. I do have a med. size rash in the right groin area but it's not painful - just the allodynia on thigh & tailbone pain. What do you guys think ???

alisha,
Shingles is usually painful, but it does come with a rash.It also runs the way of a nerve.

I've also heard that shingles is very painful...but I've never had it so I can't tell you if it feels anything like RSD pain or not. Take the treatment for shingles and keep an eye on everything. So much better if it IS shingles vs spread of RSD (though I could be wrong because again...never had it so can't compare). Even if you have shingles that doesn't necessarily rule out RSD spread so just keep an eye on it. Did the doc say how long it would take for the shingles to go away once you start treatment?

My opinion of doctors has taken a nose dive the past year and only the doc I am currently seeing has restored my faith in the idea that at least SOME doctors know what they are doing. I saw one before I had a block done in January, told him I thought I had a MRSA infection. He looked at it and told me it was an ingrown hair. I insisted that he take a culture but he wouldn't start me on antibiotics. When I went in for the block I told the doc that I thought I had a MRSA infection but since I wasn't on any antibiotics they just assumed I was overreacting. That afternoon...get a call from the first doc and guess what? It was a MRSA infection...idiot! I was so angry.

But if we go around thinking every doctor is an idiot that can lead to problems too. They do, after all, have the medical training. Shingles seems like something a doctor should be able to diagnose. So I hope that is all that it is and that you recover from it quickly. But if the treatment doesn't seem to help, see the doctor again immediately. For those that get relief from blocks it is best not to wait too long to get them or they may not work.

Good luck!

Alisha,
A rash may indicate you have a form of RSD cause by an allergic histine response in your blood stream. Shingles is localized yes. Do some more research. Might be shingles might not. The rash would be very painful blister type if it is shingles.